Melanoma: What are your tips about immunotherapy (Keytruda)?

Thankfully, my rash resolved after 7 days treatment with benadryl and famotidine. As the rash left severe itching started in my hands and feet. If I was a dog i would be wearing a cone around my head. The hand itch is so intense I hold onto blue ice at times to settle it down. The oncologist prescribed an antihistamine which is stronger than benadryl but it makes you extremely tired, a little dizzy, and shaky. So I am praying the itch resolves like the rash did, time will tell!

I have been on Keytruda for 13 months with 14 infusions done. My 15th of a total of 18 planed is scheduled for next Tuesday. However, the rash I have had from Keytruda which soon started after treatment began has spread to almost all parts of my body and has become quite severe. So, I am planning to either stop the treatment or to take a break for a couple of months after consult with PA next week. My malignant kidney tumor was diagnosed two years ago this month, and I opted out of total nephrectomy because of my age. High dose radiation therapy was done last June to stop bleeding from the lesion; it was successful. Last MRI in March showed lesion has reduced in size slightly and there is no spread. It's been a long fight but I remain hopeful.

Hello @ronsale. My oncologist mentioned using steroids (cortisone) to help control side effects of an immunotherapy and I wondered if that has been suggested to you? I was on a different PD-L1 inhibitor for 2 years but managed through without needing any treatment for side effects. A holiday from infusions was also discussed but I don't know how long a break would be needed to clear the rash. It sounds like your tumor is responding to this treatment plus palliative radiation and I hope that continues for a long time.

I have used only topical steroids for the severe rash; I can not take steroids orally because of my severe osteoporosis. Currently I am on a break from infusions of Keytruda to see how much that helps with the skin rash. In the last few days I have also started to have edema of the ankles and feet which I am fairly certain is a result of the 13 month treatment of Keytruda. I have posted this information on patient portal to make oncologist and urologist aware of this problem. But at my age I want to stay with most conservative treatment possible.

I was diagnosed with nodular melanoma on the top of my left ear a little over 2 years ago. It was removed with surgery and the margins were all negative. In my visit to my dermatologist we found a swollen lymph node just below the left ear which is malignant. MRI says that lymph plus salivary gland has cancer. Drs said at least 3b Talked to the oncologist today and have decided to go on 2 immune drugs for 4 (or 6?) weeks and then do surgery to remove the cancer. Then go on immune therapy for 1 year. Will have pet exam next week to see if it has spread. Has anyone used 2 drugs vs 1 drug? Please any positives or negatives to this approach?

Hey there, I was diagnosed with Stg IV Melanoma five+ years ago which led to surgery(removed original site on shoulder and lymph nodes in armpit) and immunotherapy. The drugs I took were Ipilimumab(Yervoy) and Nivolumab(Opdivo) concurrently for three times(three weeks apart), I was unable to take the last recommended dose. After that there was a brief pause due to side effects and Covid hysteria( it was March/April of 2020 ) and I continued with Opdivo for almost three years. At the time Yervoy/Opdivo combo was pretty much the only good option for StgIV but maybe that’s changed since then, I know they were looking at targeted therapy(forgot the name since I never ended up doing it but it worked on a gene mutation with the BRAF gene) as an option. Anyway, the side effects were quite a bit more severe for me with YervoyOpdivo together vs just Opdivo. You didn’t say which names so it could be a different scenario. There used to be a melanoma specific forum that had several people with immunotherapy histories that was pretty informative but i haven’t been doing any of that for years now. I feel like I wouldn’t be alive now without that course of treatment but you’re Stg III so may have a different regimen.

Thank you for your reply - I’m actually stage 4 with neck lymph nodes as primary and spleen. I started Opdualag recently. Dr says every 28 days and 3 treatments and then we’ll look at surgery options. I am concerned that it will spread in 3 months and if immune doesn’t work I’ve lost 3 months. Anyway that’s were I’m at

@tja I'm also Stage 4 and have been treating with immunotherapy since November after discussing all options with oncology. I understand both your treatment plan and your concerns.

It sounds like your doctor has advised adjuvant therapy: first providing immunotherapy, followed by consideration of surgery - the goal being elimination of any remaining cancer cells to reduce the risk of recurrence. This is not uncommon but it can sound scary. We tend to look to the future and all the "what if's" although it's helpful to remain as grounded in the present with the "right now's" and focus on the options presented. Sometimes, if this is a struggle, discussing grounding methods can be helpful if thoughts become more intrusive. Do you think it may be worth exploring any of those?

You also mentioned undergoing a PET scan - has that been completed, and if so, have you gotten the results?

The PET showed in my spleen as well as the primary in my neck lymph nodes

@tja I see; makes sense now as your first entry was on the 5th and then the treatment plan you noted was indicated in your follow up based upon the PET scan findings.

Do I understand correctly you've undergone one Opdualag infusion and you'll be considering surgery to the spleen sometime in August/September or so?